For my thesis I have tried to untangle the current policy process and hope to recommend a consistently better way of doing things that includes the lived experience of people with autism and their families. I’ve got a way to go yet but here is a summary of what I’ve found out.

New Zealand Autism Spectrum Disorder Guideline initiatives

Much of the current concern and awareness of ASD goes back to the death of a teenage autistic girl in 1997. Since then there have been large numbers of papers and reports, committees and research projects mainly from the Ministries of Education and Health. This work culminated in the publication in April 2008 of the New Zealand Autism Spectrum Disorder Guideline, with over 300 recommendations based on best practice knowledge from around the world. It was a world first in that it took a whole of government, whole of spectrum, whole of life approach to ASD (although the adult section was particularly light as least work had been done in that field).  The Labour-led government gave $17.5 million in 2007 for this work over 4 years. This has almost run out but hopefully some funding will be ongoing.

A contract was won by the New Zealand Guidelines Group to work on implementation. They set up a group of people including people with autism, parents and ASD professionals as their Implementation Advisory Group*. It is chaired by Matt Frost (who has written for humans). This group has its last meeting next week and an ongoing cross agency group will keep monitoring work programmes. (There is also an ongoing Living Guideline Group which is updating evidence and they first worked on ABA and are now examining medication.) 

In the last two years the NZGG’s IAG, and their sponsors in the Ministries of Health and Education, have been very busy. They started by sorted all the recommendations into five priority areas 

• Assessment and diagnosis
• Support to strengthen families
• Interventions
• Respite
• Coordination

Several initiatives have resulted. They recommended putting more funding into programmes that were already working well. An example is the training for parents of pre-schoolers with ASD. Autism NZ has been given more money to take their Earlybird course to parents in most of the North Island. Idea Services won the contract for their new ASD Plus parent education course in Northland and the South Island.  Tips is a school based programme that was boosted.

Respite was another urgent area and contracts have been given to groups in various parts of New Zealand, and work reviewing respite is ongoing.

A big need was support for families through the diagnostic pathway and a tender was announced earlier this year for ASD coordinators in the DHBs for people under 19. There was not enough money for all the DHBs to have one each so they were encouraged to work collaboratively. The successful tenderers have not yet been announced, and it is possible that some regions will miss out. There is also the issue of people over 19 to address, and currently there is no pathway for diagnosis in the public system. For children and young people there are still long waits up to a year in many regions for diagnosis and as most Needs Assessment and Service Coordination agencies only work with people with ASD plus intellectual impairment (ie not Aspergers) there needs to be a cognitive assessment as well to determine whether the child has intellectual impairment (which may take another 18 month wait). Education has its own diagnostic and support pathway and their assessment process means a child may or may not get help with a teacher aide in pre-school or school.

However, some good news is that resources about ASD have been developed for GPs, health professionals and others (called recognisers and referrers). These have been developed jointly by the Werry Centre, Altogether Autism and the NZGG, and there is now a website where they can be found (as well as a hologram of IAG chair and Aspie Matt Frost) www.asdguideline.com

Behaviour support is a big issue for some autism families and Idea Services recemtly won a contract for services in the Auckland region. A tender for services in the rest of New Zealand has closed and the successful group or groups will be announced in a couple of months.

Apart from all of this the Ministry of Education Special Education is developing a network of ‘go to’ ASD experts so there will be regional expertise available through their 14 Group Special Education offices. 

Overseeing all this is a senior officials groups with representation from several government departments as well as Health and Education, including Work and Income, Minstry of Social Development, CYFs and Justice.

Threats

However, while the ASD Guideline work is rolling out new and enhanced programmes, other parts of government are facing cuts and we need to be alert to these.

In education the cuts to community education and restrictions on entry to universities are very negative for people with autism as many have had bad experiences at school and need a pathway back into education such as through night classes. The Training Incentive Allowance which helped people on benefits access tertiary education has gone. There used to be funding for a cluster of schools to get together and employ an ASD specialist who would work across schools in the area and do such things as staff training (including all school staff). A very successful programme ran in the Wairarapa a couple of years ago and is now underway in the Upper Hutt area. However, funding for this was cut for new ventures in last year’s Budget.   The special education workers in the Ministry of Education are not considered front line and there have been several staff cuts including to pre-school autism advisors and people who liaised between families and schools. I have also heard of cuts to speech therapist positions. Other staff, already busy, will apparently also take on these jobs. This will probably mean that families have to tell their stories over and over to new staff.  My opinions on national standards can be found in earlier posts on humans. A review on Special Education has been underway over the last few months and they will report soon.

Welfare and employment are big issues in ASD. Getting the Child Disability Allowance (not means tested) has been almost automatic for any child with ASD under 16. It is now much harder and parents have to prove that ASD means significant extra costs. On turning 16 a young person with ASD could go on the Invalid’s Benefit even if they were still at school, and they wouldn’t need to keep proving they still had autism. The criteria are being tightened and many people with ASD on the IB are being put on the sickness benefit and work tested. Most people with ASD are willing and able to work but this may require significant support and employers and workplaces to understand about ASD, for example the sensory issues, the need for order, clear instructions and quiet spaces. But funding for employment support has been cut.

Changes to the Needs Assessment and Service Coordination system are likely with current work happening in the Ministry of Health looking at alternative systems such as the Local Area Coordination and Individualised Funding. These will be made public later this year.

However, there are organisations around New Zealand providing information and support. Autism NZ (www.autismnz.org.nz) is running a conference in Wellington in September which includes a stream run for and by adults on the spectrum. ANZ also have branches around new Zealand and some employ field workers and information staff. Altogether Autism (www.altogetherautism.org.nz) also provides information. The Ministries of Health and Education have ASD information about services on their websites. You can also get a free copy of the ASD Guideline or the English or te reo summary through the Ministry of Health and access regular ASD update newsletters.

There are also several facebook pages and websites relating to autism and Aspergers. The current estimate of one percent of the population on the autistic spectrum means many families, schools and communities will have autistic members.

(*Disclosure: I was part of the group which bid for that contract and am a member of the NZGG’s Implementation Advisory Group)

Sean has Asperger’s. Or is that Had Asperger’s? It is very hard for us to tell anymore. I hope this story will offer some hope for those parents who are willing to love their children unconditionally, nurture them unfailingly, and believe that we all have a place in this world.

Sean is our third child. He has an outspoken older sister – state competitor in track, homecoming queen; an introspective older brother – Eagle Scout, bass player in a band. We, his parents, are college graduates – self employed professionals. We are junkies of ‘positive mental attitude’ with our mantras being “there is no difference between the mind and the body” and “whether you think you can or think you cannot – you are right.” We have seen most of the big names in that industry: Chopra, Dyer, Canfield, Tracy and others. We were all of this before Sean was born, thank you God.

Sean had tendencies at an early age: he would not step on the cracks in the sidewalk, he would only wear sweatshirts with hoods and most of the time he had them up. He pumped (flapped) his fingers at most things he watched. He did everything in a routine. He hated bugs! And loud noises.

He had a very hard time with transitions – any transitions, places, people, clothes, food, everything. He had tantrums.

But he loved books, music and games – logic and spelling games on the computer at a very young age were his favorite. He could make his way through the steps of any game and could spell virtually anything. We discovered he could read when he was 3. When listening to music we would ask him “what note is this song?” He would go to the piano and without hesitation plunk the key that the song was in, also when he was 3.

When we discovered something called Asperger Syndrome we were terrified. Of course he had this! He had most of the signs & symptoms. What do we do?! Well, our beliefs and training told us to focus on the positive. Sean had so many positive qualities. Maybe he really didn’t have this Syndrome… then, yes, he really does.

We did not seek any medical advice. Not to diagnose, treat or even to ask questions. We sought out no help, no medication, no alternative care treatments, no parent groups, no books, not even any seminars or tapes. We went forward with these thoughts: Sean is our son and we love him just as he is. He has so many wonderful qualities and talents we are going to focus on them and deal with the rest keeping this in mind – Sean is our son and we love him.

We would be lying if we said everything went great. School was a challenge in the social aspect, which is classic. Sean had a great friend early in elementary school, but once they hit middle school his friend realized he could have just as much fun with kids who played sports and didn’t get so upset at seemingly small things. We confronted each issue as it came along doing the best we could to find a resolution he and we could be happy with, if even just for a moment. We had to be brutally honest with Sean at a young age. In third grade he was having break downs at school and the teacher called our home several times. Finally, we sat with him and said “Here’s the thing – we know the naughty kids make you mad, we know you don’t like milk, we know you know all the answers, we know you hate gym, and everything else but you have got to make it through the day without falling apart. You have to. Mrs. Smith’s job is to teach all the kids. You have to let her do her job. Your job is to do all the tasks she asks of you, the ones you like and the ones you don’t like. Our job is to love you and we do! We don’t want to say this, but you have to hold it in. You have to.” The teacher did not call again.

Over the years we have learned to help Sean deal with things one at a time and that seemed to help but we chaperoned most school trips just in case. We adjusted our working hours so dad could take the kids to school and mom could pick them up and one of us was always home. This reaped rewards beyond measure with our other children as well. As Sean matured he learned, with some help from us, to acknowledge when things started to bother him – even the kids at school learned that if he just had a second to decompress he could go on. That all seems like ancient history now. I suppose if we had written it all down we would have proof of how very difficult it was at times. The times we cried and broke down ourselves. But we didn’t keep track of the bad, only the good. Always, always, we focused on the positive – music, books, scouts. Family.

Tonight Sean will drive himself to church for Confirmation practice and after he and some friends will head to Subway to eat. So, it’s like this – does he or doesn’t he? If he was never diagnosed then maybe he never needed a cure. So we just don’t mention it. And everyday he still hears I love you.

Jamine & Brian Deal

In the full print story, Latta dishes out jumbo servings of his usual faux common-sense parenting advice, lurching into this bizarre statement:

“But I’ve been around the family area more than 20 years, long enough to watch fads come and, and now there are huge numbers of kids being told they have features of autistic syndrome disorder [sic].

“Without doubt, autism exists. I’ve seen good research on that. But people who don’t know enough about it are diagnosing it. I don’t know enough about it to diagnose it or work with children who have that diagnosis, but I know people who know a lot less than me who are diagnosing it – kindy teachers, teachers, psychologists, therapists.

“This is a small country, with a small number of people qualified and able to diagnose this. Right now, there are lots of kids who are not autistic, they are just different, but what happens is these parents have these labels thrown at them.”

So Latta, who can’t even get the name of the condition right, knows more than those unnamed “psychologists” and “therapists”? I think it’s actually quite clear he doesn’t, and that he knows very little about how ASD diagnoses are actually made in this country.

“Just different,” can indeed be a reasonable proxy for autistic spectrum disorders at the milder end of the spectrum, but that hardly means a diagnosis is irrelevant. In my experience – and I have two very different children diagnosed as Asperger Syndrome via very different routes — a diagnosis, correctly given, is a gamebreaker.

It is but a systematized collection of related symptoms – not all of which will apply to your child – but it gives you somewhere to go. Somewhere that will almost certainly lead to something better than Latta’s feeble “common sense”. So allow me to point out to Nigel Latta that children who are “just different” may well have a very different idea of what is common and what makes sense.

Update: The full story has finally been published online.

 So began a lifetime of therapy. Getting him out of hospital was hard enough, as his feeding was very difficult to establish, and we were mostly feeding him expressed milk through a nasal gastric tube. But we stuck at it, and finally got the little man home.

 Auckland hospital provided a physiotherapist who came to the house, as it was seen as highly likely Marcus would need extra care. Likely turned to certain as he developed, and continued to be well below his age for weight and gross motor development. We were encouraged to learn as much as possible from the therapist who opened our eyes to the tender art of weaving therapy into every activity.

 Curiously, the underdevelopment of gross motor led to heightened development of other areas. Marcus never crawled, probably on account of weak arm and shoulders, so he spent a lot of time sitting in one spot playing intensively with toys, and learned very quickly that he could use his mouth to get various things. He talked well before he walked.

 Because the cause of his stroke was never known for sure, and could not be attributed to a pre-existing condition, we were encouraged by the obstetrician to make an Accident Compensation Commission claim for him. I’m often struck by just how different things might have been in a country where medical accidents can only be compensated for by suing the doctors, who are likely to deny that it was an accident to whatever extent they can – but here the very doctor who delivered him was instrumental in pushing for the successful claim, and Marcus now has lifelong coverage for pretty much all costs which are linked to his accident.

 Upon the acceptance of the claim, the level of care for Marcus jumped hugely. He started to receive regular visits from physiotherapists, occupational therapists, speech and language therapists, and dieticians. He has made huge progress in every area, putting on weight, gaining strength, learning to crawl, walk, run, climb, use toys that require hand and finger strength, learned to talk about what he is doing, what he has done, and to plan what he will do.

 But he has shown for over a year now some features that led his pediatrician to give a tentative diagnosis of  ‘on the autism spectrum’. This manifests in familiar ways, that he prefers highly repetitive activities, loves to repeat long lists of things he has learned by rote, takes very little notice of other children, and generally avoids contact with them. For instance, he would often sit and play with the telephone book for up to an hour, just flipping through the pages. Or he would speak to anyone who would listen at great length about ‘Mouskatools’ which he had seen on TV, pretty much repeating the lists over and over. Or he will just stand giggling and flapping his arms, staring at a wall, for many minutes at a time.

 The therapists have generally sought to discourage this kind of behavior, typically by encouraging him to do something else more ‘constructive’. They even made the harsh call of suggesting we take books away from him for a while, because they were distracting and he was not using them as books, but as tactile toys. A bit of soul searching was required for that. This worked out very well in the end, though, his range of play expanded very rapidly after the week or so it took him to get over the fact that there was not a book to be found anywhere. We’ve given them back now and his obsession with flipping the pages is gone.

 It is always hard to know just how much of the improvement comes from therapy, both direct from the therapists, and what we have learned to apply, and how much of it comes directly from Marcus, who has a stubborn nature which enables him to persist at tasks until he attains some kind of mastery. My opinion is that it is all of these things, that therapy has helped a lot, that his persistent nature could be nature’s response to his accident, as well as somewhat innate, and that our trust in the therapists and attempts to incorporate their teaching into everything we do with Marcus, have all contributed to his ongoing improvement. I’m very hesitant to generalize anything about Marcus to other autistic children, and can only say what we’ve done that has helped to encourage development towards a stronger, more able child who can handle socialization.

 It’s been very hard for me to finish this story, the above paragraphs were written months ago, and yet I could not commit to publishing it. I guess I have to be honest that I’m conflicted about the condition itself. Marcus is only ‘mildly’ autistic, and it’s possible that love makes me blind, so that I only see the things he does that indicate autism as parts of his character. It seems rough to want to train these things out of him. And yet, the training has seemed to work, the features that seemed autistic being generally discouraged (usually by changing the focus of the activity when he seems to have fixated on something), has expanded his range of play, talk and movement. I have no idea how much of this would work with other autistic children, in whom the condition is more innate, and more severe. Each child is different, but all are beautiful, all need the time and love of their family. However they turn out.

Ben Wilson

 The act requiring the new educational standards regime was passed through all its stages in Parliament in 24 hours just before Christmas 2008. It did not go to a select committee where the public, autism advocates, and those with lived experience, could make submissions. This was unfortunate as some of us could have pointed out the negative implications for our autistic students, most of whom do not fit this ‘one size all’ approach.

 My concerns were, firstly, that our autistic students typically have strong strengths and weaknesses across curriculum areas, and limiting assessment to only two areas would give a negative and limited view of our children’s abilities. Secondly, we know that some schools only grudgingly accept our children, and they are quick to find an excuse to ask them to limit their attendance, or even leave. If these standards are to be translated into league tables, schools will not be keen on our ASD students who may not excel in the narrow curriculum areas to be reported on.

 Under the new system, children from early in primary school will be assessed against some very narrow requirements. Temple Grandin has already warned of the negative effects on autistic children of the ‘No Child Left Behind’ regime in the US, which our new regime  is based on. In her recent book As I see it (2008), she describes a parent’s frustration that in order to pass the standard, the child was denied playtimes or anything that interested her, as she did repetitive drills to learn the required material.

 English autistic savant, Daniel Tammet, has written about his own education and describes the autistic student’s typically uneven learning profile in his books Born on a Blue Day and Embracing the Wide Sky. He personally found the physical process of writing very difficult from a coordination point of view, progressing slowly and with frequent errors. Although brilliant with pure numbers, when letters or symbols were introduced into maths, as in algebra, he became confused. An additional requirement of our numeracy testing will be that students show their workings. In Embracing the Wide Sky which includes discussion on intelligence and how the mind works, Daniel describes the visual and aural patterns by which he does his mathematical and linguistic learning, and such pattern thinking is typical of autistic thinking. But it does not fit the standards-required-template. Daniel also shows that knowledge is culturally constructed and what has significance for one culture (such as the strawberries used for counting in our numerical standards requirements) may be incomprehensible to other cultures.

Reporting of these standards to parents will be on Plunket type graph, showing parents and students in a clear visual way that those below the line are already educational failures from 5 years old. How many will be on the autistic spectrum and already finding school a negative experience? That is not the way to increase engagement, participation or achievement.

Unfortunately, this focus on such a limited view of literacy and numeracy in our standards has also meant cuts in other school support. School advisors in areas such as science, art and music have been made redundant, as have many early childhood advisors. Yet these are the experts who teach the teachers about teaching and learning. We also know that libraries can be a safe place at school for our children – but now school library advisors in the National Library have been cut. And these come on top of cuts to educational lifelines for our autistic adults such as night school classes (and large areas of New Zealand will have no night classes at all from next year) and cuts to the Training Incentive Allowance whereby our autistic adults on benefits can improve their lives by access to tertiary study.

The autism sector is right to be alarmed at the cumulative effects of all these negative political changes on the ability of autistic students to achieve their acadenic potential.  The standards regime will be  implementated from the beginning of the 2010 school year. For the sake of our autistic students, we must pay attention and report what happens.

One Monday in mid-June of 1996 I took the train from Milan to Vicenza and found my way to the street address printed on the call-up card I had received just a few days earlier. A little surprised to discover that it was an ordinary looking residence, not the office or hospital building I expected, I rang the bell. A tall fellow in his mid-forties opened the door, looked at me for a few moments and declared, with perfect deadpan delivery:

“You must be Franz Kafka.”

And thus began my year of forced employment in the mental health sector.

I look back on it with fondness now, but the beginnings were difficult. Being suddenly drafted into such work – in the time-honoured and very deliberate fashion that the Italian army had of finding a placement for conscientious objectors at the last minute and with no forewarning, let alone training – was a little traumatic. Also, initially I had nowhere to stay but the house itself: I was the first objector in the history of that particular placement who came from out of town, and there was no other accommodation. The residents – half a dozen adult males, mostly schizophrenic – had but a vague concept of personal boundaries or working schedules, and since there were no nurses on duty at night they figured that waking me up to attend to their needs would be okay. I wish I could tell you that I took this entirely in my stride.

There is nothing quite so unsettling as a mind that cannot be read, because it works differently. Isn’t that where the stigma of madness comes from? But then you realise that for the mad person every other person on the planet is a source of ambiguity and confusion, and you find yourself unable to fathom just how unsettling and distressing that must feel, and the loneliness that it must bring. Coming to that realisation enabled me to get a grip on myself and a sense of just who it was who actually needed help; at the same time, having managed to persuade my superiors to find me a bed in a nearby office building made the working conditions a little saner, as it were. But I still didn’t know what my job was. Formally I was a generic adjunct to the nurses on duty, with no specific tasks – which is just as well I suppose, seeing as I had no training. I spent time socialising with the guys, played cards with them quite a bit, helped one with his gardening, another with his job-seeking and his English, but it was hard to shake the feeling that I wasn’t the only one who actually benefited from the arrangement.

The inspiration for a more meaningful way to contribute came by way of food. At the house we got our meals delivered from the hospital kitchen, and it ranged from the acceptable to the barely edible, but for dinner – by which time I was mostly off duty – I had to rely on the mess-tins left earlier that day by the door of my office-cum-bedroom. These would sometimes contain actual foodstuffs, in the form of cold pasta or slices of roast beef with salad, but just as often it would be a cold lump of sauerkraut, or several hundred mushy peas, and went straight into the bin. At 2.5 Euro per day (no, it isn’t a typo, just the pay of regular soldiers) I couldn’t really afford to dine out, and I had no cooking facilities, so I had to smuggle leftovers from the house, if there were any. It was grim.

Except for Wednesdays, that is. Wednesdays were a whole different story.

My friend Marco and I had applied for the status of conscientious objectors on the same day, and received our call-up papers on the same week, eighteen months later, a matter of days before we would have had to have been declared free of any obligation. We were both placed out of town, which was rare and unfortunate enough, but at least we were in the same region, and the council of the small town where he worked had granted him use of a ludicrously large house. So I tweaked my timetable in order to finish early on Wednesday and we got to spend the evening together, which brightened up my week a whole lot. We decided (it was his idea, I think) that on each one of those nights we’d treat ourselves to a sumptuous meal. To be precise, we worked our way through a book of recipes by Manuel Vázquez Montalbán, the author of the Pepe Carvalho novels. I still have it.

And thus some time in the winter came the idea of incorporating cooking into my work at the house. The hospital food was awful but the ingredients were fresh, so would they mind sending those to us instead? And if we wanted to depart from the set menu, we could dip into our modest fund for social activities.

Now if you’ve never cooked with schizophrenics, it’s an interesting experience, and I’m sure it has well-documented therapeutic value when organised by people who know what they are doing. We just gave it a crack, basically, and it seemed to work. There was no compulsion to participate, nor an excessively rigid schedule. The only rule was that we had to eat what we prepared, even if somebody (I’m looking at you, Paolo) had dumped half a bag of salt into the pot for the pasta. For some of the residents, who had expectations of being able to move out and live independently in the short term, there was practical value; for others it was an activity to be enjoyed if they felt up to it, and that reinforced the learning to take care of oneself that the more professional therapists were trying to foster. Plus we really did have quite a lot of fun, which has to be an end in and of itself.

In what is possibly the longest preamble in the history of this very preambley blog: that’s how I came to learn to make pizza, from one of the nurses. It’s reasonably uncommon for Italians to cook it at home, since it can be purchased so cheaply at a bakery or pizzeria, but we couldn’t really afford it at the house and besides it was a very good group activity: it took time, everybody could be given a job, it was physical, and didn’t require too much finesse. Also, while the preparation had some structure and drudgery to it, there was room to be creative with the toppings. It quickly became our favourite recipe.

***

This time last year I made the obvious point that cooking can be a way of transferring ancestral knowledge, of making somebody partake of your culture. My mother puts it more succinctly when she says that ‘food is love’, a maxim whose value has become clearer to me since becoming a parent, and discovering that cooking with the children can be an important part of the family conversation. But a new and altogether less predictable turn of events has recently put this idea into much sharper focus.

The year has been dominated for us by the discovery that our daughter is autistic. That constellation of behaviours of hers that seemed puzzling, difficult or upsetting, as well as those that suggested she may have special abilities and an uncommonly sharp mind, have been given a name, and a fraught one at that. We are fortunate to have been exposed, through friends and advocates and our son’s school, to other kids on the spectrum and their families, and that knowledge has taken some of the edge off the otherwise frightening label. Besides her being wonderful and a very smart cookie, there are lots of positives in the care that Lucia gets and can be expected to receive, giving us every hope that she will grow to be happy in who she is, and equipped to make her own way in the world.

But for the moment there remains that challenge of connecting with a mind that is different, the struggle to learn to speak the same language and to understand the world as she sees it, which can be a cause of mutual distress, for her and for us; and conversely, the joy in finding a way to get through, a space where we can be ourselves with each other, and talk, if not quite in ordinary words, and share the same experiences.

There is her territory, of music and words learned by rote, obeying her rules – the few songs that can be played or sung or danced to, the few books that she will allow us to read to her, the cartoons that she can bear to watch – and then there is the world of interactive play, of drawing or mucking about with water and containers, or the trips to the playground, all with their own carefully negotiated boundaries. But for me personally (her mother has more success with a broader range of things) there is nothing that I find more rewarding than cooking pizza with Lucia. It’s at those times that I feel that she’s stepping into my world, as opposed to the other way around, and that she is at her most receptive to what I have to say and show her. It’s the attentiveness that most kids will freely give, but that with her needs to be won, and is all the more precious.

So here’s what we do.

For the base: 500g (four cups) high grade flour, eight tablespoons of extra virgin olive oil, two teaspoons of salt, one teaspoon of sugar, 25g of fresh baker’s yeast, 250ml (1 cup) of lukewarm water.

The quantities have been refined over several years, so I have every confidence that if you follow them to the letter, you will have success. The first thing to do is to mix the yeast and sugar in the lukewarm water, and let it sit for a while. It’s at this time that Lucia will ask for a wee bit of yeast to taste on the side, and remark that ‘sugar is sweet’. Ten minutes or so later, when it’s had time to start fizzing, she will put her ear to it and delight at the sound. In the meantime you mix the flour and the salt in a bowl (‘salt is savoury’), add the oil, and add the yeast when it’s nice and lively.

Mixing the very liquid mess thus created is one of Lucia’s favourite parts, although she seems quite ginger in the picture. Once the dough has become dry enough to be handled, place it on a chopping board or other suitable surface and knead it, incorporating more flower if it’s still too sticky. But remember, you want to err on the side of soft and moist rather than dry and stodgy. This phase is the key to the whole preparation and should take you not less than ten minutes. Technique-wise, you want to use your palms as much as possible. Allow us to demonstrate.

Once this is done, you put the dough back in the bowl, cover with a cloth and let it rest in a dark place for an hour or until doubled in size. Lucia is going to insist that you check often. What you’re aiming for is to go from this

to this

Then you return the dough to the kneading surface and give it a good bash. Seriously, just pound it for half a minute or so, you want to get all the air out. Place it back in the bowl, cover with the cloth and leave in a cool dark place for another hour. While you wait, you can start working on your toppings.

Mix together in a bowl 300g of boiled peeled tomatoes (tinned is fine) a tablespoon of oregano, a pinch of salt, a tablespoon of extra virgin olive oil. Slice or grate 250 grams of mozzarella and that’s your basic margherita topping ready to go. You’ll add to it as you see fit.

Once the dough has had time to rise again, it ought to be very elastic and easy to work into a disc or rectangle, depending on the size of your tray or dish. My preference is for a very thin base and I generally extract three standard rectangular oven trays from one dough, but if you’re not practised you can initially aim for two. Alternatively, the same base will give you one tray of focaccia (the procedure for that and some alternative toppings are here). Whatever you make, it needs to cook at the highest temperature that your oven will allow, preferably in no longer than fifteen minutes or it will start to burn at the edges before it’s had time to cook in the middle. That really depends on how good your oven is. Naturally, the cooking surface needs to be greased with olive oil, and the oven needs to be pre-heated (sorry, George).

That’s all there is to it, it’s nothing complicated although it requires a little application and some free time. Having to pay attention to and be explicitly aware of the learning opportunities that Lucia gets, I’d have to say there’s plenty that we can fit into that one activity: some manual skills, a sense of time and causation (she’s learning to watch the pizza cook through the glass door of the oven) and how ingredients are combined to form something quite different, the taste of each individual ingredient and how to attend to a complex procedure in which she is asked to verbalise each of the steps. But mostly what we get out of it is the time spent together, a time in which we are both happy.

Oh, and the pizza isn’t bad either.

Giovanni Tiso

Together they have formed a research team to look at how young people with intellectual impairment like them can have more control over the transition process and resolve barriers many face in going on to work or independent living.  The statistics reveal that, compared to people without intellectual disability, people with an intellectual disability are more likely to be unemployed, have fewer qualifications, have fewer friends and live at home or with caregivers.  And there is a big gap between government policy and what actually happens.

So what can be done to address this? Their research questions include asking how young people can have more choice and control over their lives in this transition from school to post school lives.  Their focus groups include those with answers: young disabled people both at school and school leavers, famlies, educators and employers.

They have been jointly involved in research design. I asked what themes are emerging from their research as to what young disabled people want? After carefully explaining to me that there are ethical and confidential issues around their research which means they can not tell me what individual people might have said, they can reveal that some of the things the young people want are real jobs which pay proper wages, friends, to go flatting, to get married and have a family (ie the same things non-disabled young people want).  The researchers want to be valued for who they are and what they do and this, of course, includes wanting to have their research valued, to make a difference and to be paid, professional researchers. Colin is applying for funding so this can happen.

These two young people are impressive presenters on their topic and I’m sure are very skilled and polite facilitators of the focus groups.

When those with insider knowledge and lived experience conduct research it is very powerful.

Best wishes to them all.

(This was one of several papers presented at the New Zealand branch of ASID (the Association for the Study of Intellectual Disability) in Hamilton 26-27 August on how people with intellectual impairment can be central to the research process.)

Autism Spectrum Disorder

June 2009 Newsletter 

This newsletter brings together information about the progress being made to improve autism services for people in New Zealand from some of the key groups who have been involved.  It updates the information that was provided in the March 2009 newsletter. The last newsletter was structured by organisation.  This newsletter is structured by the areas where progress is being made, and references the key parts of the New Zealand Autism Spectrum Disorder Guideline (NZ ASD Guideline) that are being worked on.  This newsletter focuses on activities that are coordinated nationally.  But the NZ ASD Guideline belongs to everyone in the ASD community, and its implementation cannot rely on what is done nationally.  Indeed, any implementation is in the end done by people in their local communities and families.  If you have been involved in a project or activity that helps to implement the NZ ASD Guideline and you would like to share that experience, then please let us know.  You can contact the New Zealand Guidelines Group through asd@nzgg.org.nz.  You can use the same email address to ask questions in relation to any of the projects outlined below.

 Implementation Priorities

The Ministries of Health and Education agreed a set of priorities for the next three years of NZ ASD Guideline implementation.  They made this decision after discussions with the ASD Implementation Advisory Group, the ASD Inter-sectoral Advisory Group, and a group of senior officials from a range of government departments. The priority areas are (not in any particular order): 

1. Assessment and diagnosis
2. Support to strengthen families
3. Interventions
4. Respite
5. Coordination

The next parts of this newsletter provide updates on the projects that are underway in each of these areas. 

Assessment and Diagnosis

There are five projects currently underway in this topic area.  They are: 

1. Development of a handbook for assessment and diagnosis for education and health specialists involved in performing assessments and making diagnoses

·         Leading organisation: NZGG, supported by an expert reference group

·         Goals: a.      To provide education, health and disability practitioners with a cut-down version of the NZ ASD Guideline, targeted at them, and focused on assessment and diagnosis.  b.      To provide options for the dissemination of the handbook.  c.      To provide analysis of options available for tools that will assist the standardisation of assessments.

·         Links to NZ ASD Guideline Recommendations: All recommendations from Part One of the NZ ASD Guideline. Also 2.3.02 – 2.3.15, and the sections of Part 6 that relate to specialists, and relevant recommendations from Parts 7 and 8 relating to the involvement of Maori and Pacific carers in the assessment process.

·         Status: The handbook has been drafted.

·         When can you expect to see something from the work? The content should be completed by the end of June 2009.  It will be accompanied by a paper that provides options for the distribution of the Handbook; which should occur prior to Christmas 2009. 

2. Development of training materials for specialists in the assessment, treatment and management of ASD

·         Leading organisation:  Werry Centre, supported by an external reference group

·         Goals: to develop a training resource for specialists (paediatricians, psychiatrists, clinical psychologists & educational psychologists) in the assessment, treatment and clinical management of ASD for young people aged between 0 and 19.

·         Links to NZ ASD Guideline Recommendations: All recommendations from Parts One and Four of the NZ ASD Guideline, the sections of Part 6 that relate to specialists, and relevant recommendations from Parts 7 and 8 relating to the involvement of Maori and Pacific carers in the assessment process.

·       Status: The Specialist training package is in its final stages and currently being reviewed by the Ministries of Health and Education. Once the training package is finalised further work will be required to scope how it will be implemented (delivered).

·         When can you expect to see something from the work?  The final draft of Specialist training package is expected by the end of June 2009. An implementation plan will then be established so that the training can commence.  

3. Review/ Revision of core Needs Assessment and Service Coordination (NASC) Standards, Protocols, Guidelines and Practice Resources

·         Leading organisation:  Needs Assessment Service Coordination Association Incorporated (NASCA)

·         Goal: To enhance NASC practice through reviewing and updating its existing standards and guidelines and good practice resources

·         Links to NZ ASD Guideline Recommendations: Broadly takes into consideration all parts of the NZ ASD Guideline

·         Status: Project well underway. A review of the key NASC documents is underway.  Workshops with NASC managers occurred in May and a stakeholder workshop is planned for June.  The workshops aim to test out findings from the document review and gather feedback on issues.  Further workshops will occur in late June to provide input to the development of the final report and implementation plan

·         When can you expect to see something from the work: A final draft of the revised NASC Standards and Guidelines is due in early July 2009. 

4. ASD Specific Guideline for NASCs

·         Leading organisation:  NASCA

·         Goal: To develop a new ASD-specific Guideline for NASCs

·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8.

·         Status: The project has started. Peer review workshops with NASC managers occurred 21/22 May and a stakeholder workshop (with consumers and front line NASC staff) occurred on 29 May, with the aim of getting input into the design and development of the ASD-specific Guideline for NASCs.

·         When can you expect to see something from the work: Finalised ASD-specific Guideline for NASCs will be completed by the end of June 2009. 

5. Development of NASC Resources

·         Leading organisation:  NASCA

·         Goal: To develop new resources and tools to support the revised NASC Standards/ Guidelines and ASD-specific Guideline for NASCs.

·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8

·         Status: Project well underway. This project is working in parallel with the development of the ASD-specific Guideline for NASCs, as the resources will need to support the ASD NASC Guideline. Peer review workshops with NASC managers occurred on 21/22 May. Valuable information on existing resources was gained as well as the need for robust tools and resources to assist in ensuring that the ASD NASC Guideline is implemented. A workshop with stakeholders (consumers and front line NASC staff) occurred on the 29 May with the aim of getting input to the design and development of the ASD Resources.

·         When can you expect to see something from the work: Resources will be developed by mid July 2009. Training for NASC staff in the new NASC ASD Resources will commence in July 2009. 

Support to Strengthen Families

There are five projects currently underway in this topic area.  They are:  

1. Improving information and advisory services

·         Leading organisation:  Altogether Autism

·         Goals: To ensure that that NZ ASD Guideline and its messages and recommendations are widely distributed amongst the ASD community.

·         Links to NZ ASD Guideline Recommendations: 2.2.1, 2.2.3, and the recommendations from Parts 7 and 8 relating to the language-appropriate information provision.

·         Status: Altogether Autism has been funded to support communication of the NZ ASD Guideline.

Activities undertaken include:

                                               i.            Website development 

                                            ii.            Targeted media follow-up

                                          iii.            Developing promotional packs for stakeholders

                                         iv.            Identifying conferences for communicating the NZ ASD Guideline

                                           v.            Distributing conference materials

                                         vi.            Library development

                                        vii.            One off training for professionals

                                      viii.            Evaluating the reach and effectiveness of the NZ ASD Guideline distribution 

Additionally: 

                                            i.            Pod casts are being been developed for the website which will soon include audio and video files for download of lectures and talks undertaken for Altogether Autism. Pod casts will also include people’s experiences of living with autism. These will be accessed from the Altogether Autism.

                                           ii.            Altogether Autism has developed a reference library accessible to the public.                                           iii.            Training for professionals using a tool called ADI-R is planned for August and September in Hamilton and

                                         iv.            In May a questionnaire has been sent to a sample population of the people who were sent the guideline for feedback on the guideline.  The feedback will assist future communications and planning. Feedback from the survey will be analysed by the end of June. This will inform the Ministries of Health and Education about areas to target further distribution of the NZ ASD Guideline. 

2. Parent Education

·         Leading organisations:  Ministry of Health, Ministry of Education

·         Goals: To provide quality-driven parent education programmes that will improve parents’ knowledge of the impact of ASD. Focused on parents of young children (i.e. before the child starts school), the programmes are expected to enhance parents’ ability and confidence to support their children to communicate, manage themselves and interact socially.

·         Links to NZ ASD Guideline Recommendations: 2.2.1, 2.2.2 and 2.2.3, plus detailed information on pages 71 and 72.

·         Status: Currently, the Ministries of Health and Education jointly purchase EarlyBird from Autism NZ. The Ministries have been running an open procurement process from November 2008 until the present.

·         When can you expect to see something from the work? The process is expected to conclude with contract(s) with one or more providers by July 2009. 

3. ‘tips for autism’

·         Leading organisation:  Ministry of Education and Ministry of Health

·         Goal: To extend the reach of the ‘tips for autism’ programme through funding additional programmes and additional facilitators

·         Links to NZ ASD Guideline Recommendations: Overview 2.1, 6.6, 6.8; Part 4, 4.3.3; Part 6: 6.17.

·         Status: ‘tips for autism’ provides teams of parents, carers and school teachers with practical knowledge and skills to support children with ASD who are between the ages of 5 and 12.  Each team completes a comprehensive long term plan and short term goals which they can action the day after the course ends. ‘tips for autism’ was written for the New Zealand context and is regularly updated to reflect new evidence and changing policies.  In 2009 (up until the end of May), ‘tips for autism’ has been delivered in 7 locations (in Manukau (Auckland), Porirua (Wellington), Invercargill, Gisborne, South Canterbury, Hawkes Bay and North Shore  (Auckland)) with a further 11 courses planned (Auckland Central, Christchurch, Stratford (Taranaki), Hamilton, Nelson, Whangarei, Bulls (Manawatu), Central Otago, Taumaurunui, Rotorua and one location to be confirmed). 

 ·         When can you expect to see something from the work?  It is happening right now. Further information and applications for the course are available at www.tipsforautism.org.nz. 

4. SPELL evaluation

·         Leading organisation/s: Kiwikiwi Research and Evaluation Services Ltd, Ministry of Health

·         Goal: To evaluate the success of the SPELL programme.  This will inform the Ministry of Health as it determines whether or not to continue funding the programme.

·         Links to NZ ASD Guideline Recommendations:  2.2.1

·         Status:  The evaluation has been completed and is under consideration by the Ministry of Health.

·         When can you expect to see something from the work?  A draft of the report has been submitted to the Ministry.  It will be finalised in June 2009. Decisions will be made following consultation with the Implementation Advisory Group and the cross sectoral Senior Officials Group. Autism NZ continues to provide this education programme. 

5. Bright Sparks: Programme Enhancements

·         Leading organisation/s: Autism New Zealand (Auckland Branch), Ministry of Health

·         Goals: To build on the positive evaluation of Bright Sparks by further developing and documenting the programme.

·         Links to NZ ASD Guideline Recommendations: Part 5 of the Guideline, 5.2.1-5.2.8

·         Status: Following the evaluation of Bright Sparks; an Auckland community-based recreational based programme for children with ASD, the Ministry has contributed to one-off funding to respond to recommendations contained within the report.

Work is continuing on programme enhancements with the current focus on the access of the programme to Maori and Pacific children and young people and their whānau and aiga.

·         When can you expect to see something from the work?  The work remains on schedule for completion on 30 June 2009.    

Interventions

There are three projects currently underway in this topic area.  They are:  

1. Family/Whānau community outreach services

·         Leading organisation: Ministry of Health

·         Goal: To provide ASD-specific family and whānau community outreach services to the ASD community in Auckland

·         Links to NZ ASD Guideline Recommendations: 1.1.1,1.4.6, 1.4.7, 1.4.9

·         Status: The Ministry of Health has negotiated a contract with Autism New Zealand. Autism New Zealand will delegate responsibility to Ohomairangi Trust and the Auckland Branch of Autism New

 ·         When can you expect to see something from the work? The new services will be available by August 2009. 

2. ASD-specific communication and behaviour support services

·         Leading organisation: Ministry of Health

·         Goals: To provide ASD-specific communication and behaviour support services to the ASD community in Auckland

·         Links to NZ ASD Guideline Recommendations: 4.3.2, 4.3.4, 4.3.5

·         Status: The Ministry of Health is negotiating this contract at present.

·         When can you expect to see something from the work? The new services should be available prior to Christmas 2009. 

3. Assessment of the feasibility of having ASD-specific behaviour support services

·         Leading organisations:  Bennett & Bijoux Ltd, Ministry of Health

·         Goals: To assess the feasibility, in the New Zealand context, of having behaviour support services that are developed specifically for people with lived experience of ASD

·         Links to NZ ASD Guideline Recommendations: 4.3.7

·         Status:  Bennett and Bijoux have this contract. They have established a Specialist Advisory Group to advise them with this work

·         When can you expect to see something from the work? The report will be presented to the Ministry in August/September 2009.  Whatever steps are taken after that will depend on the findings of the report.  

Respite

There are two projects currently underway in this topic area.  They are:  

1. Extending disability respite services

·         Leading organisation:  Ministry of Health

·         Goals: To increase access to respite services

·         Links to NZ ASD Guideline Recommendations:5.2.6

·         Status: In progress

·         When can you expect to see something from the work?  The Ministry has now signed contracts for the five following services:  i.        Waikato service for people 17 years of age and over with an intellectual disability and/or ASD – Spectrum Care Trust

ii.          Bay of Plenty/Lakes (to be located in Tauranga) service for people 17 years of age and over with an intellectual disability and/or ASD – Spectrum Care Trust

iii.         Bay of Plenty/Lakes (to be located in Tauranga) service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation

iv.         Hawke’s Bay service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation v.    Wellington service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation

 These services are currently in set-up phase.  The purchase proposal process is not complete and contracts for the provision of other services may be signed in other areas in the future.  Respite continues to be an important area of priority. 

2. Describing ASD-specific respite services

·         Leading organisations:  New Zealand Guidelines Group, Acqumen Ltd supported by the Implementation Advisory Group

·         Goals: To describe ASD-specific respite services

·         Links to NZ ASD Guideline Recommendations:  5.2.1 – 5.2.8 ·         Status: The paper has been completed and submitted to the Ministry of Health, along with a draft service specification that could be used in any changes to respite services.  The Ministry is now considering how to progress this, within the context of the overall increase in disability respite services.

·         When can you expect to see something from the work?  As it is under consideration, it is difficult to forecast what will happen next.  The Ministry should make decisions prior to Christmas 2009. 

Coordination

There are three projects currently underway in this topic area.  They are: 1)      Business case for DHB Developmental Coordination

 ·         Leading organisations: New Zealand Guidelines Group, Ministry of Health

·         Goals: To develop new resources and tools to support the revised NASC Standards/ Guidelines and ASD-specific Guideline for NASC ·         Links to NZ ASD Guideline Recommendations: 1.2.9, 2.4.1- 2.4.4, 7.3

·         Status: The Ministry has conducted preliminary consultation with child development centres and with the ASD Implementation Advisory Group.  As a result of this work, the Ministry decided to complete a formal business case with options for how best to achieve the outcomes desired by the guideline.  Work has commenced on this business case.

·         When can you expect to see something from the work?  The business case will be available to the Ministry by September 2009.    2)      NASC ASD Coordination 

 ·         Leading organisation/s: NASCA

·         Goals:

a.      To develop and establish a NASC ASD coordination function to support existing staff identify, plan and review packages of service/ supports required to meet the prioritised needs and goals

b.      To improve knowledge skills, attitudes of NASC staff

c.      To support NASC managers and team leadersd.      To improve linkages with and across existing disability support services ·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations 1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8

·         Status: Project started. Initial concepts and approaches have been worked through with NASC managers at peer review workshops in late May. A stakeholder workshop (with consumers and front line NASC staff) occurred on 29 of May aimed at getting input to the design and development of the ASD Coordination Function 

·         When can you expect to see something from the work? The ASD Coordination Function will be trialled from the end of June 2009 with the view of full implementation being completed by June 2010. 3)      Review of interagency protocols (Equipment and Therapy) between Ministry of Education and Ministry of Health for school aged children 

·         Leading organisation/s : Ministries of Health and Education, Acqumen Ltd

·         Goals:  To review the current Equipment and Therapy (physiotherapy and occupational therapy) protocols and make recommendations for revising the protocols within existing policy and resourcing. This includes:

a.      achieving the best outcome for children and young people and their families/whanau

b.      clarifying funding roles and service provision responsibilities

c.      maximising cooperation between agenciesd.      development of complementary roles and responsibilitiese.      assisting families/whanau and fundholders in making appropriate referrals ·         Links to NZ ASD Guideline Recommendations:2.4.1- 2.4.4, 3.2.4.5, 4.1.1-4.1.5

·         Status: Following consultation with key stakeholders and families of students in four locations nationally and feedback from a questionnaire distributed to individuals and key organisations, the protocols are being updated into:

a.      A Memorandum of Understanding

b.      Therapy and Assistive technology/equipment Operational Guideline: Roles and Responsibilities.When can you expect to see something from the work? 30 June 2009.  Once the revision is complete further work is required to scope how the above documents will be implemented  

Associated activity led by the Ministry of Education   In addition to the work that is led by the Ministry in the fields of parent education and teacher support (noted above), the Ministry is also leading the following projects in support of the NZ ASD Guideline: 

1. Living Guideline

·         Leading organisation:  New Zealand Guidelines Group, Ministry of Education, supported by a Living Guideline Group.

·         Goal: To ensure that the NZ ASD Guideline remains up-to-date and relevant as evidence changes.  This process will not add new topics to the NZ ASD Guideline, but keep the current topics up to date.  It will focus on areas where the evidence since 2004 has changed enough to warrant changing a NZ ASD Guideline recommendation.

·         Links to NZ ASD Guideline Recommendations:  Not directly linked to any as this project is about ensuring that the recommendations remain derived from current evidence.

·         Status:  A Living Guideline Group has been convened and met in early June, chaired by Professor Ian Evans (with Matt Frost as the deputy-Chair).  Its first job is to identify topics in the NZ ASD Guideline where the evidence has changed enough to possibly change a recommendation.  Applied Behavioural Analysis (ABA) is one topic that is already confirmed. The Ministry of Education recently funded two literature reviews that can be put through the living guideline process to determine if the evidence identified in the reviews requires changes in the current recommendations about ABA.

·         When can you expect to see something from the work?  The work plan will be with the Ministry of Health at the end of June 2009.  The next newsletter should contain more information about timeframes. 

2. Education ASD Action Plan

·         Leading organisation:  Ministry of Education

·         Goal: To develop a coordinated national plan for professional learning and development, including establishing a network of ‘Go To’ people who will take a leading role in providing evidence-based support and current information.

·         Links to NZ ASD Guideline Recommendations: 6.6, 6.7, 6.9-6.14, 6.16-6.25, 6.27.

·         Status:  The plan has been drafted and consultation is underway.  The draft plan stresses the need for activities to be connected and coherent and affirms that everyone has a role to play in supporting children and young people with ASD to learn, achieve and contribute to society, and outlines support for these roles.

·         When can you expect to see something from the work?  Initial scoping of the associated and detailed work plan will be completed by 30 June 2009.   

3. Early Intervention ASD Project

·         Leading organisation:  Ministry of Education

·         Goals: Exploring the use of the Social Communication, Emotional Regulation and Transactional Support (SCERTS) framework in early intervention in NZ. Specifically, during Phase Two (2009-2010), the goals are:o        Improved outcomes for more children, families and whānau;o        SCERTS effectively adapted and operating in the NZ context;o        More staff with a wider range of skills in providing effective interventions for children with ASD, their families, whānau and education teams;o        Further refining an effective model for providing professional learning and development and sustaining effective practices;

·         Links to NZ ASD Guideline Recommendations: 3.1.1 – 3.1.12, 3.2.1.10, 3.2.2.1 – 3.2.2.7, 3.2.3.1 – 3.2.3.3, 3.2.4.1 – 3.2.4.5, 3.2.5.1 – 3.2.5.3, 6.6 – 6.7, 6.9 – 6.12, 6.16 – 6.23, and 6.27.

·         Status: Phase Two (2009 – 2010) underway, involving thirteen teams across the country, 77 early intervention practitioners and at least 144 children, their families and whānau.

·         When can you expect to see something from the work?  There is a website for the project – www.inclusive.org.nz/asdev (part of the website is restricted to participants in the project). As resources are developed by the teams, they will be added to the website. 

Keynote address to the Disability Studies Conference, Disability Studies Research Centre, University of New South Wales,Sydney, June 2009

Dr Martin Sullivan, MasseyUniversity, Palmerston North  

Introduction

This week is a significant time in the disability communities of Aotearoa and Australia because it was about a year ago we lost two major disability activists, teachers and researchers.  I speak of Associate Professor Anne Bray and Associate Professor Christopher Newell and would like to take some time to remember and honour them.

I doubt many on this side of the Tasman would have heard of Anne Bray, let alone known her.  Anne’s younger brother had Down syndrome but he lived at home when children with Down syndrome were sent to institutions. Anne began her teaching career at Canterbury University in 1974 before being appointed to the position of lecturer in the Faculty of Education at the University of Otago. Disability issues always featured prominently in her teaching.  In 1984 Anne was appointed director of the Donald Beasley Institute (DBI) in Dunedin which had been established for research work in the area of intellectual disability.  The guiding principle of all Anne’s work was that of social justice and had the object of improving the lives of intellectually disabled people. Anne and the DBI were at the forefront of the movement to close the large psychopaedic hospitals: she and her team provided the empirical evidence for their closure, the how of the closure, and then the empirical evidence of the success or otherwise of those closures.  She built a strong team of researchers, supervising many through their PhD studies in conjunction with the University of Otago.  She edited the New Zealand Journal of Disability Studies (NZJDS) for many years before handing the editorship on to me when she contracted cancer.  Anne’s legacy is her fearless advocacy for disabled people, the DBI and its ongoing transformative – emancipatory research with intellectually disabled people in Aotearoa/New Zealand (ANZ).

Associate Professor Christopher Newell of the Tasmanian School of Medicine was a well known and much loved disability activist and intellectual in Aotearoa New Zealand.  So much so that he was accorded honorary Kiwi status whenever he visited.  He was in much demand as a keynote speaker and would do at least a conference a year in Aotearoa.  News of his death led to an outpouring of grief on our side of the Tasman. We held a special remembrance ceremony at which a number of us from the disability community spoke of his lasting impact and the lessons he had taught us in his gentle, persuasive way.

Christopher began his working life in a sheltered workshop and ended up as an Associate Professor lecturing medical students in ethics.  Often he would lecture his students from his hospital bed, which he would get wheeled into the lecture theatre in the Hobart Hospital.  Christopher was an academic activist to the core.  He was also an Anglican priest who chose not to take the high road but trod the backroads and byways where he befriended, counselled and supported the abandoned, destitute and lonely – many who were disabled people.

Christopher’s big thing was about “moving disability from other to us”.  He did this on a personal level among disabled people and struggled to inculcate it in the consciousness and public life of Australia.  He was instrumental in approaching me to extend the NZJDS to become an Australasian journal.  He will live on in journal we are planning: Disability Studies: Aotearoa and Australia.  He lives on in his work, and, more importantly, in the hearts of the many he touched and whose lives he transformed.   

Two mighty totara have fallen in the forest of Tane.  Haere ra Christopher.  Haere ra Anne.

In preparing for this key note, I had a look at the abstract I had written some months earlier to remind me of what I said I would say today. I thought it prudent to have a look at some of the work of my Australian colleagues so as to avoid carrying coals to Newcastle and looking rather stupid.  In one paper, Helen Meekosha, makes the point that the insights emerging from Australian disability studies seem to have little relevance to the makers and shakers in disability studies in the UK and USA who are immersed in their own projects (and, I might add, rivalry).  It then occurred to me that disability studies in Aotearoa New Zealand are probably just as irrelevant and unknown to Australian disability studies and scholars as their’s are to the North. Hence, rather than sticking religiously to my abstract, I though this might be a good time to tell you what has been going on across the ditch in disability studies, disability policy and disability generally.

Disability Studies 

The only programme in ANZ dedicated to disability studies is the one I teach.  It is a Post Graduate Diploma in Arts with an endorsement in Disability Studies.  A number of students go on to take an MPhil which gives them a masters degree by completing a disability related thesis. 

The programme began in 1993 with a paper called Disability Studies which concentrated on theory, policy and methodology.  It could be taken as an elective in either the Masters of Social Work or MSP programmes.  In 2003 we got permission to offer a PGDipArts with an endorsement in Disability Studies, so a paper concentrating on the Disability Rights Movement, rights, advocacy, ethics and contemporary issues was added.  I would like to add another paper so I could have a named Masters degree but since funding is tight in the tertiary sector the orders from on high have been to cut rather than add papers. People who take the PGDipArtsDS include disabled people, parents and, mostly, people working in the sector.  Next year I begin teaching a 3^rd year paper, Disability in Society, at undergraduate level which I hope will serve as a feeder into the diploma course.

When asked what disability studies are about I tend to say “The social & political aspects of disability”. I’ve modelled the programme more down the British line than the American, so it’s rather paradoxical that an American theorist, Tobin Siebers, more accurately captures what I try to do in the Diploma when he says:

The number one objective for disability studies … is to make disability an object of general knowledge and thereby to awaken political consciousness to the distasteful prejudice called “ableism”. (2008, 81)

I do this by exposing my students to what disabled writers and their allies have to say about disability in contemporary society.  Many find the whole ‘social oppression’ thesis quite shocking; and, indeed, it is shocking: what happens to most of us with impairments in today’s society is shocking. 

I must admit I sometimes feel a bit of a fake teaching the social oppression thesis because here I am sitting in front of class, highly educated and earning a good salary.  My position and income gives me certain freedoms and choices my students don’t have or are ever likely to have.  And I think this is why I like Siebers’ definition so much; it reminds me that no matter how privileged a position I occupy within academia, I am still subject to ableism both within and without academia.

But I digress.

Other programmes featuring disability in ANZ are mostly taught in the Colleges of Education which are involved in teacher training, specifically special needs education.  At the Massey University College of Education, a Centre for Research into Inclusive Education teaches papers firmly based on the social model as do the programmes at Auckland and Canterbury Universities.  

There are of course students dotted around the various campuses completing theses on disability related matters in disciplines such as anthropology, sociology, education, psychology and public policy.  These usually only really come to my attention when they are finished and if I get to examine them.

Numbers at Masters and PhD thesis level have increased in recent years thanks to scholarships established by the Health Research Council.  These scholarships are aimed at increasing the research capacity in the disability area – especially among post grads with disability.  A few years back the HRC asked Anne Bray, Alan Clarke and me to review their disability funding portfolio.  We found that practically all funding had been knobbled by clinicians doing ‘cause’ and ‘cure’ type research.  We introduced HRC to the social model and argued they should direct funds to researching the well-being of impaired people living in a disabling society. They agreed (and have since been true to their word) and we then said “well to do this research we need to increase capacity amongst disabled people by funding them through advanced study.”  Hence the scholarships.

What made this all possible was the policy climate of the day.  As you shall see, we had a NZ Disability Strategy in place and a government with a well developed disability consciousness.  I think it important to spend a bit of time on policy and disability policy at this point, because much of what happens within Disability Studies in Aotearoa is very much determined by what is happening in policy.  By this I mean that when teaching a research based degree, I find that students mostly look to apply disability theory in a critical analyses of contemporary disability policy.

Disability Policy Aotearoa 

To understand social policy in NZ one has to understand the founding document of ANZ, the Treaty of Waitangi.  Te Tiriti o Waitangi was signed on 6 Feb 1840 between Maori and representatives of the British Crown.  It is a short document consisting of three articles.

Article the first [Article 1]

The Chiefs … of New Zealand … cede to Her Majesty the Queen of England absolutely and without reservation all the rights and powers of Sovereignty which [they] exercise or possess…

Article the second [Article 2]

Her Majesty … guarantees to the Chiefs and Tribes … the full exclusive and undisturbed possession of their Lands and Estates Forests Fisheries and other properties which they may collectively or individually possess … but the[y] … yield to Her Majesty the exclusive right of Preemption over such lands

Article the third [Article 3]

… the Queen of England extends to the Natives of New Zealand Her royal protection and imparts to them all the Rights and Privileges of British Subjects. 

But to confuse matters, two texts were signed: one in English and one in Maori.  About 40 Chiefs signed the English version, 500 the Maori version.  I’ll return to these in a moment.

The treaty was by and large ignored by settler governments and following the land wars of the 1860s, much of Maori land was alienated via confiscation, legal and illegal land deals, swindles etc and with the loss of land the loss of language, culture and traditional kin based society followed as Maori drifted to urban centres. Here the ravages of alcohol and disease took further toll. 

By the 1960s, Maori were largely an urban, dispossessed people at the bottom of all social indicators.  Clearly the policy of assimilation was not working and one of biculturalism was suggested as the way forward for Maori.  Biculturalism is a type of cultural pluralism characterised by two partners rather than several.  This was more in keeping with the spirit of the Treaty of Waitangi which implied a partnership between Maori and the Crown. By the 1970s biculturalism had become the basis for Maori policy and through the next decade it quickly became the goal for all government departments.  By the 1990s, substantial progress had been made to at least introducing a cultural dimension and increasing the Maori workforce in the public sector (Durie, 1994). 

Parallel to, and giving impetus to movement within the state, was a renaissance in things Maori within urban settings. In the early 70s a number of young urban radicals formed Nga Tamatoa and began discussing their alienation from their Maoritanga; ie their loss of language and connection to their ancestral land, marae and their culture.  One faction within Nga Tamatoa modelled themselves on Black Power leaders in the US while a more conservative, university educated group set about supporting Maori migrants to the cities to find jobs, representing Maori before the courts, they set up kohanga reo or language nests to teach their children the language, established year long courses for training teachers in the reo and so on. So from the 70s what became known as the Maori renaissance in things Maori dominated the political & cultural consciousness of Aotearoa.  The Treaty of Waitangi, breaches by the Crown and calls to honour it were central to this renaissance (Walker, 1990; Durie, 1994).  

As I have mentioned there were English and Maori versions of the Treaty and this resulted in much debate around interpretation.  [See Durie 1994 p.85 for diagram] Maori argued that a greater degree of Maori authority was promised in the Treaty, while the Government argued that a full transfer of sovereignty had occurred.  In an attempt to reach some sort of compromise it was decided that it would be easier to follow the principles underpinning the Treaty, rather than the actual text itself.  A series of Treaty Principles subsequently emerged in a number of forums including the 1988 Royal Commission on Social Policy (RCSP), the courts and the Crown/government.  These principles were used to guide the implementation of the Treaty in various settings. The ones which concern us in Disability Studies are those which the RCSP formulated to guide the development and implementation of social policy generally.  These are the principles of partnership, participation and protection.  

Partnership

·        sometimes used to describe a working relationship between Maori Iwi (tribes) or hapu (sub-tribe) and government agencies

·        implies an association of equals but it more often refers to a reassignment of government authority to a tribal group within constrained guidelines – I fear that this is about as good as it gets in some of those partnerships between disabled people and the state or professional bodies 

·        symbolism – Treaty partners working together to achieve mutually acceptable goals

Participation

·        refers to Maori involvement in a particular activity or sector eg District health boards (hospitals and their regions)

Protection

·        this relates to Article three in the Treaty which guarantees Maori the same rights and privileges as other New Zealanders

·        implies “active protection” which requires Government to intervene positively rather than just let Maori take their chances alongside other groups ie provide culturally appropriate services

Many within the disability rights movement in NZ see themselves as occupying a similar position to Maori in mainstream society.

·        Maori were colonised by the British crown; disabled people have been colonised by medical and associated professionals;

·        Maori were made strangers in their own land; many people with disability were locked up in institutions and made strangers to their communities;

·        Maori were forced to participate in a biased, mono-cultural system; disabled people were excluded from participating in their communities on their own terms;

·        Maori are discriminated against by racism; disabled people by disableism/ableism;

·        Maori have high rates of failure in an institutionally racist education system; people with disability are routinely excluded from an ableist, mainstream education system;

·        Maori are subject to higher rates of unemployment and lower rates of income than non Maori; disabled people have high rates of unemployment and many are condemned to survive on subsistence level benefits;

·        Just as Maori have had tino rangatiratanga denied and made subject to British law, people with disability have had their humanity denied and made subject to pity, medicalisation and welfarism;

·        Just as Maori have been granted a limited form of tino rangatiratanga over tribal resources, many disabled people have been granted limited control over their lives within the confines of services, individual life plans, group homes and so on.

Given these parallels, it is not surprising that many disabled people in Aotearoa came to the conclusion that they needed their own treaty; a treaty to establish a genuine partnership with government; a treaty to guarantee our equal participation in society; a treaty which affirmed the active protection of our citizenship rights by the state.  With the election of a Labour led coalition government in 1999, this seemed a distinct possibility because in opposition they had promised us a Minister and Office for Disability Issues and the development of a NZ Disability Strategy. 

After extensive consultation with disabled people, the NZDS was adopted in 2001.  It is underpinned by the social model and aims to create a non-disabling society (P.5) by progressively removing the barriers to participation which confront impaired people.  This is captured nicely in the following:  

Underpinning the New Zealand Disability Strategy is a vision of a fully inclusive society.

‘A society that highly values our lives and continually enhances our full participation.’ (NZDS 2001, p.1)

Fifteen objectives are set out for the Government to achieve on its way towards a non-disabling society.  Ministries, departments and state agencies are required to report on the progress they have made in implementing the NZDS in their annual reports to parliament.  In the 2004/05 Progress Report, it was noted that a growing number of crown entities and territorial authorities were willingly taking part in Strategy implementation even though they were not required to. This is encouraging.  As is the broad, cross party support for the Strategy.  

Given this, many disabled people in Aotearoa New Zealand now see the NZDS as their treaty with the Government to build towards a society in which they can participate on their own terms and as much as they want. It also implies a partnership between disabled people and the government as well as the active protection of disabled people by the government.  Such partnership was highly visible during negotiations around the UN Convention on the Rights of Persons with Disabilities; from the beginning the NZ delegation was the only one to consist of State officials and disabled people including one with intellectual disability.

The NZDS has its limitations.  For example, it only applies to the state and those contracted by the state to provide services. And while its philosophy is right, the objectives could do with refinement, and implementation is quite lumpy.  But what it does provide is a multitude of entries for analysis and critique within disability studies.   And then, two questions are critical: is it working for Maori? Is it working for non Maori?

And therein lies the rub.  When I, a pakeha, am talking about disability, am I talking about the same thing as when Maori are talking about disability?  Up to twenty-five years ago it would have been acceptable for me to go out, do the research and become the ‘expert’ on Maori and disability.  This is unacceptable today because of Treaty consciousness, tino rangatiratanga and the reality that only Maori can speak for Maori with any authenticity.  And this presents a problem insofar as there are very few Maori disability researchers in the field.  

Maori and disability

One source, Maori Concepts of Disability, by Jo Kingi and Anne Bray reveals the potential for our talking past each other.  When Kingi asked Maori what the word disability or the concept disability meant to them, they generally saw it in terms of the effects of colonisation: 

It’s disability to have your land taken off you, it’s a disability to have your family dissolved and shifted to an urban environment where you’ve never been before.  It’s a disability to be told that you can no longer grow your own food so you have to get a job in a system that has been set up by white people for white people….  (Kingi and Bray 2000, p.8) Maoris are being brainwashed into doing things the pakeha way – that’s disability – it’s got to be done the Pakeha way – brainwashed. (ibid. p.8) We are disabled in the Pakeha world – in our world we’re not. (ibid., p.21) Poverty was seen as more disabling than any physical, psychiatric or sensory impairment. Drugs, alcohol and tobacco use by Maori were issues that were also perceived as disabilities by Maori (ibid., p. 12).   Policies of assimilation, especially the legislation which made the teaching of te reo Maori (language) in primary schools illegal and which remained in force until 1967, were seen as especially disabling.  One person spoke of his loss of language as his disability. Most spoke of the process of colonisation and its particular effects on identity and self worth as a disability:  We have a tendency to think of people in wheelchairs but I think from my understanding, and no doubt others, that disabilities is that people have lost their knowledge of whakapapa [genealogy] and how they are related to whanau, hapu and iwi [family, sub-tribe and tribe].  (Kingi and Bray 2000, p. 18) When asked if they thought there was a difference between Maori and pakeha concepts of disability, many commented on just how different the worldviews actually are:  Well I think the Maori health view is far more holistic than the pakeha health view – it takes into account the whole being and I believe the pakeha health view separates it – fixes one thing (ibid., p. 22)  Well I know we are different because we accept people as they are. (ibid.) There was no such things as manic-depressives or schizophrenic in Maoridom… . (ibid.)  It is important to note that Kingi stresses there is no such thing as ‘the’ Maori view on disability and what she presents is ‘a’ Maori view of disability.

This tends to be born out by an earlier report He Anga Whakamana. A Framework for the Delivery of Disability Support Services to Maori, (1995) which takes account of the effects of impairment as well as those of colonisation and assimilation.   In one of the earlier quotes, a participant mentions the loss of whakapapa and the knowledge of relationships between whanau, hapu and iwi as a disability.  This person is talking about whanaungatanga or relationships; the sense of family connection built through shared experience and working together which gives people a sense of belonging.  Whanau translates into extended family or family group.  So Maori do not see themselves as individuals so much as part of an extended group, be it whanu, hapu or iwi.  Identity and place in the world is closely tied to these groups.

This has implications for disability studies and disability support services, because while it may be appropriate to treat disabled pakeha as individuals, disabled Maori must always be seen as part of a whanau.  This already happens to a certain extent when Maori are negotiating over services etc. They are encouraged to bring members of their wider whanau to support.   When my pakeha friend is having another confrontation over DSS for her autistic daughter, I usually attend these meetings as whanau support even though there is no blood relationship between us.  This is entirely consistent with contemporary meaning of Whanau.  I guess you could call this biculturalism in action.  In summary, it is evident that disabled Maori see themselves as Maori first and as disabled people second.  This has huge implications for disability studies and the disability movement in Aotearoa in terms of developing a true partnership with Maori if disability studies and the movement are to have any relevance.   

It also means that disability studies in Aotearoa has to become bicultural and within that bicultural framework provide active protection for Maori academics and Maori students.  Active protection suggests to me a parallel development in which Maori have rangatiratanga and are resourced to do disability studies according to tikanga and in a culturally appropriate way.    Just as the Treaty of Waitangi implies one nation, two peoples, a Treaty centred disability studies programme will be bicultural and involve exchanges and opportunities for learning between te Ao Maori and Pakeha worldviews on disability I think it would be very useful for disability studies in both Aotearoa and Australia to do some research into whether any indigenous disability movements have developed, and if so, what forms do they take, their culture, objectives and so forth. I think we have a lot to learn from indigenous people when it comes to disability. 

On that note I would like to finish.  I have attempted to provide some insight into disability studies in Aotearoa NZ by unpacking the cultural context which influences both disability policy and disability studies.  I have done this at the risk of conveying a view of disability studies as been narrowly policy focused and obsessed.  Nothing is further from the truth as all the debates about the utility of the social model, of structural as opposed to poststructual approaches, the problem of impairment and how to bring the body back in without slipping into medicalisation etc, etc are alive and well on our side of the ditch.  These are worthy debates but, perhaps it is time for us in the global south to be shifting our attention to what is distinctive about disability in our part of the world, what we can learn from it and how to ameliorate it.  

Durie, M.  (1994) Whaiora. Maori Health Development. Auckland: OxfordUniversity Press.

Kingi, J. and Bray, A. (2000) Maori Concepts of Disability. Dunedin, N.Z.: Donald Beasley Institute Inc.

Ratima, M., Durie, M., Allan, G., Morrison, P., Gillies, A. and Waldon, J. (1995)  He Anga Whakamana. A framework for the delivery of disability support services for Maori. Wellington, N.Z.: Core Services Committee, Ministry of Health.  

Siebers, T (2008) Disability Theory. Ann Arbor: The University of Michigan  Press.

Walker, R. (1990) Ka Whawhai Tonu Matou. Struggle Without End. Auckland: Penguin Books.